My Writing to The Long Haulers

Years of treatment turn you into a seasoned professional of sorts, though unplanned. It’s not a job you sign up for, but hey, you gain sharp understanding skills. I suppose that’s one boast-worthy achievement, and I hope sharing some insight can help others just starting the long-haul battle.

When your health gets labeled as “incurable,” you become a long-hauler. You need ongoing care and a steady support team, looking to others facing the same struggles. A simple smile from someone who understands can mean the world. Misery loves company, but in this case, it feels comforting. The course may be different, but inside, you share similar feelings; you’re on the same wavelength. Even if your signals are at different frequencies, you’re able to be yourself without pretending.

This cycle can stretch on for years. While choices offer value, they become a routine that is never routine. I see those presenting a facade of normalcy, masking an internal struggle. You’re stronger than you think, and you’re not fighting alone.

Our struggles and experiences bond us into a chosen family. Hard days, no matter the reason, push us to lean on each other. That’s what makes connection so special—knowing we can face whatever comes, even when the road twists. To endure a single cycle makes up the aim, proving difficult when prolonged.

The hundredth needle still stings, and anti-nausea meds are your lifeline. You’d swap places with a body double to get through it. It’s getting old, and it’s brutal. But in those tough moments, fellow treatment warriors find comfort in sharing dark humor only they understand. They crack jokes about assistive devices they never expected to need.

Long-term fighters make you laugh, even when it’s hard. Humor emerges even during difficult scenarios, like those involving “fall and can’t get up” occurrences. We share stories of, “You should see the other guy.” When people stare at my treatment access, I’ve thought about joking that it’s a new government tracking device—then they’d look away fast.

Life isn’t a game; it’s a series of seasons that test us. No matter how muddy or tough it gets, you push forward. Each chapter is a story of strength and perseverance. Get yourself a sturdy pair of duck boots because the journey gets heavy. Roll with the puddles, mud, and rain—find joy in every splash. Refresh your style, add bright colors to your day, treat yourself to some retail therapy, and break a rule now and then with a harmless prank. My nickname is the happy unicorn—purple, pink, and blue swirl into my gray hair. People often ask, “Why do that?” It’s simple: I do it because I can. Coloring your hair is in your control; why not beautify it?

When seasons drag on, they become bittersweet. The ebb and flow of relief and grief do a job on your mindset. You miss the old you, grieve the loss of friends, but embrace the new, dancing through the rain between the drops. Life has happy moments and tough times, making it vital to focus on the present. Long journeys teach this lesson well. But it’s a lesson everyone should explore.

Challenges in life cultivate intention in our relationships, and time clicks. Einstein’s theory of relativity describes that time is not absolute but depends on the observer’s point of reference. The passage of time varies with speed. Dare I say, challenges speed us up, only to slow us as we need to make the memories count. I guess anyone can relate to the stigma of the day the treatment ends.

In the weight of it, do you cherish each passing moment? If struggle teaches us one lesson, the value of purpose. This alone is a win. Without direction, we lose our way. The path ends; this much we know. We live but one life. What do you lose by living without intent?

The experience of navigating a long treatment course has helped me on my journey, but that’s not the main point. Everyone faces his or her own struggles. What surprises me is that small wins bring unexpected clarity. Even without planning, your story becomes filled with victories, setbacks, and lessons learned. Hope sparks a fire, and faith grows when least expected. Through the cracked displacement, wildflowers appear and enhance the design of your life with a full spectrum of color, and the weeds succumb to their allure. For each person in a battle, the tough stuff builds a strength that keeps us flourishing amongst the thistle, even when the finish line moves further away. In these moments, your people become stronger than you realize and braver than you thought possible.

Deadlines; what’s the issue? We all have them? But in the life game, no one knows the end date? Everyone follows the same, albeit unpredictable, course. We need to live, not dwell on the what-ifs that obscure the present.

Regardless of our battles’ causes, we absorb blows, yet recover. You will also suffer a few wounds during the journey, but everyone can build memories surrounded by their posse and lift morale to heal each other. The challenges shrink when we toe the line together, and we keep on grooving!

Excitement surges during tough times; adrenaline surges. Then it fades during slow periods. You cannot simply walk away; that is the tough truth. To make matters worse, these seasons can drag on for you and your loved ones.

Here is one perspective: have you ever watched a youth league championship game? What if the game never ended? How does that impact players, coaches, and families? My guess is they stop showing up or come with no energy. Frustration grows, and players wear out. Treatment’s long-term effects may mirror this; however, focus on the positive, even with occasional setbacks. That’s okay. It’s normal, just re-fuel and fill it up with regular. When I receive treatment, I perceive it much like high-grade gasoline. I get excited to reboot with a full tank even though I know I may run out of gas. The trick is to focus on the boost, use every drop and let it ride.

Challenges arise from various sources—long-term physical health crises, mental health issues, troubles at home, or fears of rules that change our lives. Financial strain adds to any stress, and negative thoughts can be hard to shake. Every fight is different. Stay determined, even with exhaustion as a companion; faith can act as an exceptional antidote for resilience. Keep a dose on hand!

These seasons will have an impact beyond your view; let that be your fuel.

As a seasoned patient, I see the flaws in myself. I keep learning from thorns while seeking the roses. Sometimes this comes when we see another fighting their own battle. This allows a role reversal as you get to provide that whisper of hope, and serving others brings a smile to any weary heart. Now, that’s wonderful medicine!

After many seasons, you want to protect privacy, as it gets monotonous when your story sticks on repeat. Folks try to stay involved, but they may drift; a reaction that is, of course, understandable as the routine setbacks grow frequent. You don’t want to wait for the treatment to end. You don’t want pain to be your story.

Instead, you jump out of that treatment chair and you take the trip, eat the ice cream, stay out way too late, laugh, say what you think, allow the feelings, seek God, love more, and live! Shouldn’t that be everyone’s life goal, one minute at a time?

Your story can’t wait for the treatment to end! Instead, keep living when the cure doesn’t come. You don’t have to share your ongoing schedule, just lie low when needed and show back up when you can be yourself. Everyone’s dealing with their own stuff, and the stress of long battles has become the new normal these days. The world is crazy, have you heard? People talk of end dates and forget to stay centered.

You will debate with yourself, crack jokes, and negotiate for a better outcome. On other days, you’ll face uncontrollable chaos. Treat yourself by savoring the little things, such as stadium peanuts, and slathering that corn on the cob with extra butter and Parmesan cheese. Sometimes you wish for a break—no upcoming treatment—or to breathe and relax. But you’ve gotta do what you’ve gotta do!

Remember, you’re still human. That crushed feeling is normal, and purpose still lives. People will watch how your crew performs. That’s okay; it’s easy to criticize someone’s effort—especially when they’re not munching on those magic prunes. Maybe they want to try them and see what they produce, okay, just kidding.

Keep searching for humor. I promise you it’s there. Stay focused on what needs doing; ignore the noise, throw opinion and judgement to the curb regardless of circumstance as time waits for no one. Remember, each of you has been through tough times and long battles. Your circle might shrink, but it shines brighter and feels closer than you ever thought possible. The steady fervor of your squad never falters. They jump in an emergency, and you have the best time possible as the narrative alters.

You learn to navigate by inhaling hope, seeing the challenge as a blessing. Why, you may ask? Because you don’t let fights linger. You learn to appreciate the roller coaster and curse it at the same time. The huddles become super faith filled and you live in the fruits of the spirit. That’s a decent life! Plenty of fruit among the thistle, as you learn to stomp out those weeds along the way.

I am in awe of the long haul, seeing how love increases in adversity. Kids grow into amazing humans, and you learn it’s okay not to be okay. Grace flows to pounce on the temporary missteps of frustration and pain. I won’t sugarcoat it. Long-haul work proves tedious, still you learn to forgive, hold one another close, help others in their struggles, and even allow yourself a release now and again, maybe even with unicorn hair.

Thanks to the cross, our hearts are free to live in the moments, even if the treatment doesn’t end. One day it will, for everyone. Focus on storing those memories to fill your tank. We have only one day! So, God, whatever your plan, we need to believe. Thank God I do, and you can too. We endure one battle at a time! I will keep a lookout for you, long haulers. Put the flowers in your hair. God is in the details, so you won’t fall off the edge. Keep it real and know you are never alone!